Alexander's Journey.....

Today was Alexander's turn to see an Orthopedic Surgeon as he has shown some very strange walking and running habits in the past year.

I had brought it to the attention of Dr. Maynard, the boys Pediatrician, who gave us a referral to see Dr. Mindy Siegel. 

Today was the day and Alexander got to meet PA Bershinsky who ordered some x-rays right away.

The results are as followed. Both feet have issues but not the same kinds.
His right foot collapses in the middle, possible due to weak muscles. The assessment is that Inserts and Physical Therapy should be able to correct this by strengthening his muscles in his foot.
His left foot sadly is another matter as his ankle is not aligned with his knee. Most likely the insert and PT will not have much of an impact if at all. In that case he will look at it again in 4 months and then most likely will schedule surgery to correct the bones by breaking and resetting them. That will mean 8 weeks in a cast and crutches. 

Alexander was NOT thrilled to hear this but the brave little boy he is he accepted it and asked many questions already about the procedure and the rehab. 
This of course might hit right during the Winter Snowboard and Ski Season but then we also had Connor in casts for 8 weeks during that time two or was it three years ago? Gosh my brain is tired......

We have been very very busy either traveling or having visitors all summer which has been WONDERFUL and I will post about our adventures later on, but right now I admit I am sleep deprived, have not been eating well and my workout session pretty much disappeared. So now I am tired and we are facing a 5K this Sunday - lol

Hoping this will put me back into gear and move towards a healthier life style again.
Also the boys are now back in full time school and not to happy about it... they do come after their Mom in that regard ;)

Hugs,

R A C A

Reminiscing about JDM and 3 1/2 years .... pictures now and then.....

The JM Mom's and Caregiver Page on FB has got me thinking today. 

For one I was motivated to post a couple of pictures of Connor. One from when he was first diagnosed and being treated in the Hospital and one from just yesterday. JDM is a life sentence for now until there is a Cure, but for those who are newly diagnosed there is also a view into this life that shows it goes on and even if it is a roller coaster of ups and downs our kids will not always look the way a high steroid treatment makes them look.

Now there was also another post that asked the Question what are our biggest fears or worries since the Juvenile Dermatomyositis Diagnosis. This one is easy to answer but with a painful feeling inside:

My biggest fear is loosing Connor to this Disease. The next worry after this is if he can survive it and fight it all his life then what impact will it have on him throughout his life? 

Will it hold him back to live a 'normal' life? 

Will it stop him to pursue certain dreams or jobs due to this limitation?

Am I doing a good enough job to teach him that while he has JDM it will and should not rule him?

That he can go out and search for things that will full-fill him and make him happy and can he ignore that disease even if the daily medications and weekly shots might be a passenger for him for the duration of his life?

I think we as a family are making a great effort to do just this. We travel, we play and we find the things to do that he is able to do. So while he will never play Football or might never get to go on a Roller Coaster, neither of these are things a human needs to feel great and have fun.

As I tell him daily. His greatest gift and power comes in the form of his brain. It can be his best friend or biggest enemy.

That part goes for all of us. Same for Alexander and his ADHD. Same for me.... I can chose to see the good or focus on the bad.

So easy to type and not always to do....

Hugs,

R A C A